Is anyone on the Infregen/Riba therapy?

[hope2Bok]

I really want to know if it is as bad as the peg w/Riba. I had severe itching when I was on the 48 week treatment and I finished last December. I was still having itching attacks up until May. Since the hep c didn't go away, they want me to try this other therapy and I'm a little concerned because they're not sure if it was the peg or the riba that caused it. Can anyonne give me any info on this?

[cindee]

Hey girl, I knew you had been though it....but WOW! I never knew how much. I feel like a cry-baby now and I only relapsed once!!!! You are a hero in my book too! You are a tropper and I needed to know all that!!! You will definately be in my prayers each day! I pray you will find a tx that will finally work for YOU! You deserve it! WOW! You blew my mind! I will surely be lifting YOU up to GOD! love @ many prayers, Cindee

[cindee]

Hi and welcome..I've never seem you here, but sometimes I DO over look things. I am starting a clinical trial in October. I was so lucky to find a doctor in my area that does clinical trials. He works hard with Duke University Hospital.

I am 48 yr old female..Hep C geno 1A. I started tx in Dec. 2002. I was on rebatol and pegasys. I went for the 48wks of tx. Did 100% and 4 months post tx still felt awful. I was undectable all the way! And then for some unknown reason...I replapsed!

This has the doctors baffled. So I start a trial in October. Just my 2 cents worth, but what do you think about trying to find a new doctor that does trials...and the meds are free. My new hepatologist says thse new meds are about 1200.00 a month. Just my 2 cents worth...but what do you think? much love @ many prayers....PS BTW I had a bx a few wks ago and it was wonderful...came back stage 1/ grade0-1...with no scarring, so those meds definately did some major damage to that nasty ole' drag_____on!!!! Can't get much better than that ...HUH? And my new hepatoloist says he could start to treat me now, with the same meds as before, but 99% of the time, if it doesn't work the 1st time, it won't work the next.  Look forward to hearing from you. Prayers!

[susan400]

I have no idea about that testing that you're asking about.  I know that it would cost more bucks probably.  As it is, I end up paying for my extra PCR's out of pocket because the insurance won't pay for them but once every 6 mon., so I have to come up with the $250 approximately every 6 weeks to get the viral load done.  My doc likes to get them often while I'm on treatment to keep track of what's happening.

To you and everybody else...I don't feel all that brave.  I lean a lot on the the Lord, have lot's of supportive people in my life and just keep on doing what needs to be done.  I really don't think I'm all that great, but I sure appreciate everybody's cheering me on!

Susan400

[Showboat]

Wow....You sure have gone through alot.  I admire your determination and your courage.......as Rev said..."I hate this disease"....I ditto that.  You really are a strong lady......may you find the tx that finally knocks this dragon down and out....  I pray for your SVR....Peace

[TnHepGuy_]

Thanks alot for posting that piece. It's a wonderful one that greatly expresses the need for humility before God - and His great and never-ending mercy.


TnHepGuy

[cuteus]

Susan, as I said before, your determination will pay off, this kind of hard work has to yield a positive result for you.

then, something you said got my inquiring mind going, are today tests able to quantify the two genotypes, can they tell 1a vl from 1b's?  if both or only one is  present at the pcr? that is some interesting theory your drs have.

[susan400]

Oh, I forgot to say that I've also tried everything else, including Zadaxin.  I didn't get anywhere with the Zadaxin either.  The only thing that I have not tried with all the things out there is Amantadine.  I've tried EVERYTHING else.  Double Dosing, both Pegs, Infergen-twice, Intron-A, Zadaxin, and now with the inclusion of the Actimmune, and of course the Riba is always part of this mix, too.

Susan400

[Indiana]

Holy **** Susan. You're not fightin the Dragon anymore.....it sounds more like the alien from planet X now. Does your load level ever respond to any of the meds? Does it ever go undetectable....... and just comes back after the meds are done?
With all the meds and time you've put in, has your damage level even shown any improvement at all?
Keep pluggin away sweetie. There has got to be an answer out there somewhere.

[TravelGrl]

Would love to compare notes with you.  My daughter has tried everything that you have.. also with no real results..Can you contact me at ***@****  Maybe we can put our heads together..

Best Wishes,
Jodi

[susan400]

With each treatment (except the Pegasys and the Zadaxin), my viral load dropped and my LFT's normalized, but I never reached the undetected status.  On Pegasys and Zadaxin, my LFT's and my viral load actually went up by a bunch.  With each biopsy I've had, and I've had 3 of them, the fibrosis has increased.  Presently, it's at the beginning stages of bridging, my last biopsy in April showed some bridging.  The way I see it is that perhaps with all my treatments, I've slowed it enough to keep me from already being in cirrhosis, if it's still progressed to this point in spite of all my treatments, what could it have done if I hadn't treated at all?  So, I have to think that positive way.  Also, this is just since 1996.  I've had the Hep since approximately 1982-1983.  That was when I was an IV drug user.  In 1985, I had a blood test that showed that I'd had some type of hepatitis, non-A, non-B.  But, at that time, they didn't know **** about Hep C, so my doctor just said no big deal and sent me on my way.  I am a genotype 1A and 1B, a mixed genotype.  My doctor thinks that what is happening is that every time that we make some progress on one of them that the other one may be kicking in, it was just a thought, no scientific proof on that.  Susan400

[Indiana]

I had the same problem trying to pick out what cow to tip the first time I tried it on tx. I was standing there deciding on an easy one, got distracted by a fox at the tree line, as I was lookin at that the cows all walked away. Then I realized I was standing in the pasture all alone and wondered why I came out there in the first place! It wasn't until I get back home and the kids asked which one I nailed that I knew what I was out there for.
So now Peg and cow-tipping are alike. Who'd have thunk it?


I am really liking the whole idea of the twice a week peg. All I've read about it looks so good. If I had to do it over again I think I would look at that real hard. Perhaps adding the little helpers like Zadaxin or actimune in there somewheres. The possibilities are interesting. I'm really glad I don't have to decide that for myself. Good luck to those who do. At least there are some choices now.

[Galen]

Oh my God, Miles.  I had trouble picking out cereal at the grocery while on tx.  I stood there forever and finally left without any.  I can't imagine having to pick out my own tx.  You are amazing!

[susan400]

Hi there.  I'm currently on Infergen + Actimmune + Riba.  This is my 2nd try with Infergen, but my first try with including the Actimmune with it.  I did not respond on the Pegasys, but did better with the Peg-Intron.

Susan400

[hope2Bok]

Well, thank you everyone. I hope that the infergen will be a piece of cake for me. However, I know what the ribo does to me. The only good thing is I'll lose more weight which in my case is a good thing!

[MKAndrew]

Generally, the nonpegylated interferons are more difficult to tolerate.  There is a known correlation between side effects and the size of the IFN molecule.  Intron-A is credited with the most awful sides, with Infergen coming in a close second.  Pegasys has the fewest reported side effects, and it's the largest molecule of IFN out there.  That's the general rule, but in my own experience, I've heard from people who think Infergen is a piece of cake and Pegasys is hell.

There also seems to be a correlation between molecule size and rapid kinetics.  This is an unwanted trade-off situation between pegs and nonpegs.  Nonpegs seem to knock down viral load faster, and those of us who are resistant may benefit from high doses of small molecules.  The problem here is exposure time.  Some of us tend to develop resistant strains during lag time, and the nonpegs last about 8 hours.  So you may begin with great kinetics and end up with a resistant strain.

On the other hand, the pegs work more slowly, but exposure time is dramatically increased, so there is, in theory, less opportunity for molecule-specific mutations.

Some doctors are using Infergen as an induction tool - it causes rapid decline in viral load at high doses (15-30 mcg QD), and there is some evidence that since Infergen is not real interferon, the drug doesn't create anti-IFN antibodies. (multiferon, an all-natural nonpeg is also believed to be easy on the antibodies.)

Right now, the problem with Infergen induction is the eventual switch to a PEG.  I've been considering this for a while - Infergen for 48 hours to 2 weeks, followed by Pegasys.  My own experience with IFN points to likely problems with quasispecies mutation during lag time - even on Pegasys.  I got a 3-log response from Pegasys simply by moving my shots closer together with a slight increase in dose.

So I don't know.  I used to complain that there were not enough options for treatment.  Now there are so many, I'm getting down to the wire and haven't yet decided.  I'm still leaving myself with an emergency PEG - Peg-Intron, in case I decide against Infergen and start right off with Pegasys/Actimmune.  If I don't get the kinetics slope I want, I'll stop treatment for a bit, then start in with high-dose Peg-Intron twice a week.

[gonagetbetr]

I know someone that just finished ist week of infergen he has a web site as well. and is a great friend

http://forums.delphiforums.com/hcvchat/messages
you may want to talk with him he is scheduled for 548 daily shots daily regiment consisting of infergen 15 mcg/ribavirin 1200 mg and Amandatine 300 mg.

he is actually posting his experience.
I hope this helps

Dottie